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So, I’ve been away from my own blogosphere a while. Sometimes it just doesn’t feel like the right thing to do. The concept of “shelter in place,” made real during the aftermath of the Boston Marathon bombing, really appealed to me over the past several months. The idea of staying in where it is safe so that the world can take time to set itself right before we venture out again. It doesn’t have to be about danger, but sometimes it is about preservation of self. This is what I have been doing – sheltering in place.

But today it seems right to venture back here. Today there is news that is worth sharing, because I can say that investing in hope pays dividends.

In a post last summer, I wondered when it was okay to give aways things that most children outgrow during high school. We all have remnants from our childhood stashed away somewhere (don’t we?), but in the case of our boy we have, well, a lot of things we know that he is not ready to part with. So I kept most of it. In that process, I took a very long look at the book shelf. The ABC and farm books are long since packed away, but many of the most beautifully illustrated books, picture encyclopedias and easy readers remain. I know he appreciates the images and that they inform both his understanding of a story and his artistic sensibilities. Still, I very deliberately left the collection of biographies on the shelf next to the head of the bed. I bought them during the middle school years, when they were age appropriate, because they were fact-based, had lot of photos but contained some narrative stretches on highly reinforcing figures in history: Teddy Roosevelt, Abraham Lincoln, Amelia Earhart. He always looks up facts on the internet about these people; I convinced myself the books were still useful, and they look nice (and not too incongruous) on the shelf, too.

I know he will never be in love with books the way I was. I know he will never delight in conjuring places, events and people from a page dense with type. I know that I am lucky that his visual learning style is tailor-made for 21st century digital information. I know all of that, but all of my knowingness didn’t prepare me for the moment when, upon peeking in to say good night, I saw him reach over and slip a book off the biography shelf, open it and begin reading. Reading for pleasure. Reading for information. Reading pages on which there were no pictures at all. Just type. I slipped away unnoticed, afraid that I would interrupt and ruin the moment by making too big a deal of it.

But it was a big deal. It reminded me (not for the first time) that I kid myself that I know more about him than I do, and that creating limited opportunities for him will yield limited results. I won’t be placing Ulysses on the shelf anytime soon, but I’ll be upping the ante on a lot of fronts based on this moment. It also reminded me that one of the reasons that I felt the need to shelter in place was that the conversations that swirl around the senior year of high school are all about competition and achievement. Conversations that lead to well-meaning questions that I don’t necessarily want to answer. That simple act of opening a book means more to me than an 800 SAT score, but there aren’t many who would understand that, and I am past the point of wanting to explain it (and yet here I am, explaining it).

I need to leave more books on the shelf, more doors ajar, more options on the table. We don’t have to have anyone’s life mapped out by May.

But I had to know something. The next morning at breakfast, I asked him what he read before bed last night.

Ever since the 18th birthday earlier this spring, I’ve been in a state of emotional turmoil. It’s only a slight exaggeration. Now I try to make some sense of a teenager’s room that runs the gamut from Winnie-the-Pooh to Scooby Doo with everything in between. It’s a collector’s dream and a parent’s nightmare. I’ve learned the hard way that throwing the wrong thing out means I will be hounded eventually to replace it – it could be five weeks or 5 years from now, just long enough to make what cost me $1.99 in 2003 now cost $67.99 on Ebay today. I know parents who have purged their house of everything Thomas and Pixar to help their kids become adults but my problem is that I really am loath to replace Toy Story with the Man of Steel. To me, that’s just another kind of arrested development. More importantly, he’s not interested in that stuff – he sleeps soundly through superhero movies on a regular basis. He loves what he loves.

And the books. Which ones will he ever read? How can we know what will prove useful or interesting, just by waiting patiently for him to notice the ones placed where he sees them every day? To get rid of the easy readers seems mean, to get rid of the more advanced books seems pessimistic.

Will he look beyond the action figures to the books behind them? Maybe.

Downstairs are the bins of paperwork that requires filing or tossing – one for school, one for insurance, one for general ASD stuff, one for transition, one for keepsakes and artwork that show developmental progress, or the lack thereof. But I only end up weeding things out I know are redundant – I just don’t know when a school or a court will need to see what we have and I’m afraid to get rid of something that could be a key piece of evidence of … I don’t know. And every bin or toys or papers brings a flood of memories and emotions that don’t want to stay on the shelf where I keep them. I am trying so hard to focus on the future that sifting through the past seems like a bad idea just now.

So I guess I’ll stick with The Wizard of Oz and The Sound of Music – at least they are live action – and wait a bit longer for the moment when we can at least move some stuff up to the attic. And we will know soon enough what schools, doctors, agencies and lawyers require and then, maybe then, we can let go of at least some of the past.

In a nod to the late Roger Ebert, I’ve assembled a list of movies and shows that can endure the repeated watching that results with having an ASD person in the family. This list is highly personalized – you may find the movies I love are the ones you can’t stand – still, I’ve tried to give a quick rationale for why I like or dislike each one. There is one universal truth: if you expose ASD kids to inappropriate language, they will repeat it – in public and loudly. SpongeBob Squarepants deserves a post all to itself. You’ll have to wait for that one. The Same goes for Finding Nemo. The jury is still out on Scooby Doo.

Inexplicably, we go through pro and anti-muppet phases and continue to have lengthy discussions about the “realness” of Muppets. The Muppets are also very useful in teaching about humor and jokes like puns – ASD kids seem to read the social cues of muppets better than in actual people.

So many people think this movie is too sad, but there is no greater depiction of the mother-baby connection in animated film. The pink elephants and the crows are also objectionable to some people, but that Casey Junior Train is an icon that endures. It’s what inspired the artist in our boy. For years he would set paper, crayons and paint in front of me and make me (and his teachers) draw it over and over – and then one day he did it himself.

The older the better – Ringo, James Carlin and Alec Baldwin if you can find them. At one point I wrote to Baldwin telling him he should make videos as Mr. Conductor in which he eats a variety of foods to model good eating habits – the single act of eating celery and carrots in the Magic Railroad movie changed our lives. No, he didn’t write back.

My favorite story about this movie: when we were doing cognitive testing, the examiner asked our boy who discovered America and the answer our boy gave him was, “Christopher Plummer.” Also, he drew the cathedral wedding scene using the characters from Scooby Doo.

We canceled our premium cable channels after he stumbled on this and became obsessed by both the sex scene and the transformation from man to beast. It did help us communicate at a key point in his development because we realized that references to the Wolfman occurred when he experienced digestive pain.

Both lists could go on forever, but these are the ones that come to mind without a trip to the movie shelf. If you’ve found anything good, helpful or just fun for older kids and teens please post a comment – we are always looking for more adult content that is not too adult, in terms of language, sex and violence.

“‘Kindness’ covers all of my political beliefs. No need to spell them out. I believe that if, at the end, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. To make others less happy is a crime. To make ourselves unhappy is where all crime starts. We must try to contribute joy to the world. That is true no matter what our problems, our health, our circumstances. We must try. I didn’t always know this and am happy I lived long enough to find it out.”

– Roger Ebert

Roger Ebert died today. I loved watching Siskel and Ebert, and even though I found myself agreeing with Gene Siskel more on serious films (my first movie critic love was Pauline Kael – I read all of her books and wrote a paper on her in high school), when Ebert said a movie was delightful I knew it was worth watching. When I got around to reading his reviews instead of watching him on TV, I liked him even more. Finally, the grace and bravery with which he handled his disabilities at the hands of cancer made him a hero. By that time (2006) I was trolling for examples of what people did when life threw them a curve. So many people withdraw from public life when faced with that kind of adversity, but he understood, used and took solace in the healing power of the written word. When we visited Chicago in October 2011, the only souvenir I brought back was a signed first edition of his memoir, Life Itself.

We take inspiration where we find it, which means it is important to raise our heads sometimes and take in the world free from the lens of autism. What better way to do that than watch movies, which can transport us to times and places far beyond our oft-constripted world. When I am looking for a good movie – new or old – my first stop is the great movies page on rogerebert.com. You don’t have to read Robert Ebert to admire him, but if you need inspiration, there is a lot to choose from.

We are movie people. When our kids were small they didn’t have special showings for kids and people with autism like they do now. I think it’s great that they do, but we’ve kind of developed own set of tools and rituals that get us through the movie experience. For many years our boy spent every movie happily on my lap, with my arms wrapped around him and his hands firmly over his ears. That was how he managed the sensory overload of a loud movie. When he moved to his own seat he would do one of two things (after eating exactly half of his popcorn and giving the rest to Dad), lay his coat on the armrests and go to sleep half leaning on me and resting on the coat, or put his head on my shoulder and have me put my hands over his ears while he watched. I am in awe his use of sleep as a coping mechanism when he is overwhelmed or distinterested. How many people do you know who can sleep soundly – snore, even – through The Avengers, Thor, Iron Man 2, and 8 innings of a Red Sox Game at Fenway Park?

It’s been a lackluster winter for family movies (with the notable exceptions of Life of Pi and Lincoln, both of which he sat through, riveted and perfect) so we haven’t been in months. Finally, cabin fever drove us out of the house to see Jack the Giant Slayer and this time the boy and I found ourselves watching shoulder to shoulder as I waited for him to lean over and nod off as the beanstalk wound its way into the sky. But the lovely girl and the prospect of romance kept him awake this time, and he kept whispering to me “Do you think Jack will marry the princess? Are they in love? Are they going to get married? Will her father the king approve?” Usually the only questions I get are whether this is a short, medium or long movie, so the specific plot questions and the arm tapping and hand squeezing and his turning my head to look at him when he spoke to me were all new in this setting, and most welcome (but his brother did move one seat down).

If you sit in the front you can put your feet up and no one cares.

But the best part was when the grotesque giants made their first appearance and I instinctively raised my hand to cover his eyes and at the exact same moment he did the same, covering my eyes with his hand. There we were, side by side, with our hands clapped firmly over each other’s eyes, trying to keep each other from being scared. He knew it was funny, too, even as he kept his hand firmly in place until we agreed that we could look at the screen again.

I know it’s a milestone, whatever just happened there. It’s a new level of reciprocity and sophistication, a point at which he now wants to take care of me the way I try to take care of him. It’s what we wanted and worked for but not necessarily what I expected to happen, because at some point expectations get to be counter productive when you are raising kids, whether they are typical, autistic, or anything else. Goals are essential, but expectations just get in the way of seeing and responding to what is right in front of you, and if you are lucky someone will put their hand over your eyes during the scary parts.